Five years on: the day I learnt too much.

It’s not the day of surgery that I need to purge, but day two. And there isn’t much I remember of the surgery day itself anyway. There is one shonky video of Albie with his cavernous surgical gown on waiting for theatre. Marcus is chatty, trying oh-so-hard to stretch a thin veil of cavalier adventure across the whole occasion. At one point he pans to me. I’m holding tight onto the rail on the wall as if we were all on a carnival ride. I snap at him “Don’t film me!” – my face is drawn and white.

I wore scrubs and carried Albie into the theatre. It was brightly lit and stainless and a myriad of masked bodies stood expectantly. I stayed till he was under.

We waited the day out as zombies.

We went to a cafe called Hallelujah.

We walked around Auckland Domain.

We went and sat outside the doors to the Intensive Care unit long before he would be there. I had a pile of magazines, of which I read no word.

It was early evening, when we finally got to see him again but everything had gone well. We’d been told what he would look like after surgery and to remember to take photos – so we can show him when he gets older.

We took photos.

I haven’t shown them to him yet, but maybe that day will come.

We sat with him for about five hours and my body slowly tired – drained by a day of adrenalin and wide eyed worry.

One of the rules of Intensive Care is that you aren’t allowed to sleep in there. It’s an infection control thing – nightclothes and blankets and pillows have no place with the naked and wired. And my body selfishly craved sleep, as much as my soul wanted to stay. We retreated about 10ish, thankfully leaving my sister to sit vigil with him through the night. We were blessed by beautiful support. That walk away from Albie, to the place where we slept- perhaps 500 metres away, was the cruelest of separations. I was empty, a bodyshell walking off into the night, my own heart with my son as he lay coma-still in a separate building.

And that was the end of surgery day. Day one. It was as routine as they wanted it to be. And, I think it would all have been fine, if that is where it had stopped.

But that is not where it stopped.

I’ve many, many fragmented memories of day two . They aren’t linear and I’m not keen to craft a story around them. Just last night, after a celebratory dinner out, Marcus and I put our boys to bed and sat on the couch and began to speak about it. I think it’s the second time we’ve unpacked it together since it happened. Tears were shed as we told each other things we’d both hoped to forget.

The morning in the unit started really, really good. Albie was off the ventilator and sitting up. He was asking for water, but he was still nil by mouth, so he wasn’t allowed any. He was getting pretty miserable but he was really good. I was reading him books to distract him. Everyone was buzzing about how great he was doing. His nurse was saying to me that he’d be out of Intensive Care that afternoon. I was brimming with pride.

They were about to remove his left atrial line, a monitoring line against the outside of his heart that he no longer needed. I remember asking how it would get removed, and she said we just pull it gently away.

I asked if I should leave. I’d struggled with seeing some of the things they have to do in Intensive Care, and had taken to standing in the hallway rather than getting hysterical at his bedside. I wanted to be there for Albie but I didn’t want to be there like that. But she said I’d be fine and to stay.

And so I did.

She pulled the line out, much like an IV line and it slid out easily. The nurse took the line away and was charting it.

And then he changed colour.

I was beside him and his colour.

So yellow.

The colour. Too yellow.

And his eyes weren’t his. They were rolling and shaking and twitching.

And the numbers on the screen, which every intensive care parent knows all too well, were jumping erratically huge jumps up and down and up and down.

I was moved back by hands, away from his bed as a flurry of staff attended to him. Two hands were on my shoulders and a quiet, calming voice was in my ear.

A nurse was serenely calming me, ‘This can happen sometimes. His heart has gone into a funny rhythm from the line removal. It’s okay, it happens sometimes. They’ll just give him some drugs now to settle his heart back into rhythm.”

I was staring at the machines and at the sight. I knew it was bad because there were too many people moving too fast.

And then the sound and sight of a flatline.

We were shunted for the corridor, and the window blind quickly pulled down.

Someone told us he had experienced a cardiac arrest and they were starting a resuscitation.

When Marcus and I spoke about this last night, he said that I let out a primal wail – a noise he said he has never heard before or since.

I have no memory of the noise that came from me or whence it came. I do remember my legs failing me and some hands grabbed for me before I hit the floor.

The thing with all of this – which I am sure the unsympathetic will want to point out – is that Albie is here. All is well that ends well.

But, and I think this is why I am writing so fast right now, just because it ended well, doesn’t mean it didn’t happen at all. That moment – that moment when they told me my son was being resuscitated – it happened.

My body had it.

My soul remembers it.

It happened and I need to speak of it.

I recently attended a Self-Care and Resiliency Workshop organised by Heart Kids. The room was packed full of heart parents, all of us injured in our own ways by the sufferinng our children have been through.

The walking wounded.

The facilitator, bless her self-care socks and good intentions, spoke of ‘tweaking our outlook’ to make bad situations good and about the positive qualities we can draw on in hard times. I was hopeful for more than that. The whole room was hungry for something more meaty to guide us through living experiences like this. I hope somehow this blog post wends its way back to her and she can catch a glimpse of the resilience we need for this weight.

Tweaks in outlook are hard to make on horror like this.

After the corridor, we were moved to a small room. Another one with tissues.

We sat and stood and shook and stared at each other and the walls. Marcus was incarnating, switching from ‘No, no,no’ to ‘Albie you’ve got this, you’re okay Albie’ and back to ‘No, no, no.’ I don’t know what I was doing. He took me by the shoulders and we closed our eyes together. Naught like life and death to bring prayer out in lapsed Catholics.

A Lady Called Heather, had the unenviable job of giving us updates. At first it was that they were trying to resuscitate him. And then it was that they are trying to get him on an ECMO machine.

I didn’t know a lot about ECMO at that time, except that it was the very last stop before death. It was the singular hope for Albie to survive. We probably only spent about 30 minutes in that white-walled room, but the abject terror of not being with your child whilst an anonymous team fights for their life for you – it sticks. It really sticks. At some point, Heather told us they had put Albie on ECMO, and we emerged from that white-walled room, as parents of a child in Intensive Care once more.

I called my sister, who had returned to her friends house to sleep. So caught in what had happened, I was completely unconscious of the fact she had been up all night with Albie. She came straight back in. And we called some of dearest family and friends in Wellington. I remember Marcus simply saying, ‘It’s all gone bad, it’s all gone really bad.’ Jason asked if we wanted him to come, and we said yes. He left work and caught a flight.

I learnt about bardo the other day, a buddhist concept that explains a state that you can enter in which your usual life just falls away.

They were talking about it in relation to meditation, but mentioned it can happen in illness too, where other things you are usually concerned about diminish in significance.

We entered bardo that day.

The spiritual progress of it though is only now beginning to be realised.

Sorry about that! 🙂 I think a book is coming too! Maybe that is what all this time percolating was about….. I’m thinking of doing this, http://nanowrimo.org/ Deadlines are my friend.
Thanks so much for commenting too G – I’m very nervous about this post, having stepped outside the box of ‘things people usually talk about’ with such abandon. xx

Hi Sarah Ok, so you’ve got me crying now and I’m feeling like a terrible friend because of my lack of contact with you. I fear I’ve slipped into acquaintance territory! I’d love to see you, it’s been too long. I totally get bardo by the way, and it always hits me in hospitals. When would suit you? Gabby x x

I could barely finish reading this, so many tears and such a huge lump in my chest aching for you all. You are so brave and so brilliant to write this dear Sarah. Sharing grief is so important for us to stand together, hold each other and support those who are going through similar. Your words are so powerful and beautiful. Thank you for sharing them. Love you all xxxxx

Thanks for commenting here babe – its really affirming to read, so thankyou!! It was scary to share but I am liberated in its telling and I am soooo lucky to have such wonderful love around me. Thankyou gorgeous xxx